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Cystectomy-Most Common After Effects

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  • Cystectomy-Most Common After Effects

    Once again, we have a superb posting by Judith who has helped so many patients as they have struggled through this difficult procedure. Thank you Judith for being so supportive! Awesome post. - Jill O. (10/5/06)

    As the moderator of this forum I just wanted to list the most common after effects of cystectomy/bladder removal. While everyone is different and will not experience all these things or may have other issues, here are the most common that can happen within the first few months:

    Depression or sense of loss. Many people go through a sense of loss or depression due to the change in how they now urinate. Even though for many getting rid of a diseased bladder is a relief it still is a loss- you are now different. This feeling can last for either a short time, for months, or even years. It is important to recognize it and seek help if it becomes overwhelming. This a very natural thing to go through, it is normal to have these feelings!

    Tiredness. You have just been through MAJOR surgery. A common reaction is the feeling that "I felt so much better in the hospital, why do I feel so terrible now?" When you were in the hospital you were waited on, someone even brought you your medicine! Now that you are home you have to move around much more and if you are like most people you do not have someone to wait on you for your every whim. This is a good thing because the more you force yourself to get up and move the sooner you will be on the road to recovery. Do not overdo it, and rest when you are tired, but do make the effort to take short walks, make a quick meal- zap food in the microwave or heat up a can of soup. They say it can take up to a full year for the body to totally recover from surgery, though you will really be feeling much better before that, barring any complications. If you feel that you more tired then you should be, do ask the doctor to do bloodwork to check and make sure everything is within normal limits.

    Changes in bowel habits. Some people may experience diarrhea or constipation after the surgery. This is due to the fact that your bowel has been used for either an ileal conduit or some sort of internal pouch. When they take out a piece of bowel and resew the ends back together (called an anastomosis) it can effect bowel function. In most cases this will settle down and you will go back to "normal" usually within months as things heal and readjust. If you are having a lot of trouble call your doctor to evaluate the problem so they can sort things out and get you back on track.

    Mucus in urine. You will now see mucus in your urine- this is NORMAL!!!!! It will never go away completely, though if you drink lots of fluids there will be times when you do not see it. The reason you have mucus is because the urine now passes through bowel. Bowel's normal function is to produce mucus to help move stool along, just because there is no longer stool going through there, the bowel does not know this. Therefore it continues to do this ever important function. There will be times when it is more frequent or thicker, especially in the beginning, but over time (months-years) it will thin out. If it becomes exceptionally thick and has a foul odor then it is time to go get a urine culture done to make sure no infection is present.

    Stoma size. When you first get your ostomy be it an ileal conduit (this where you wear an external pouch on your body) or an internal pouch (which you catheterize) and a stoma (opening) is created for urine to come out of, it will at first be swollen. In time this will shrink. It can also change shape. If you have concerns call your ET nurse if you have one, or your surgeon.

    Skin irritations. Depending on the type of surgery and what you use to cover the stoma if there is one, some people with sensitive skin may get different types of irritations or rashes. Usually they are fairly easy to diagnose by a professional and easy to treat.

    Most importantly though is if you have any concerns the first thing you should do is call your doctor. This board is for support and sharing ideas and experiences. Most people on here have no medical training so any advice, or comments should be checked out with your doctor before you try it.
    Lastly, just because someone has a problem and posts it, this does not mean it will happen to you as well! If you read anything at all on here that you find scary, talk to your doctor about it. Judith
    Last edited by icnmgrjill; 10-05-2006, 08:27 AM.

  • #2
    Excellent post, Judith! Really needed. I think this should be nominated for the President's award!



    • #3
      Thanks Judith!!! Great info..thanks for sharing that....but I DO NOT mourn my old piece of poo bladder one single bit!!! Goodbye and good riddance forever I say!! Never did anything but give me grief....But not anymore baby!!! Look out world!! Here I come!!! WOOOOHOOOOOOO!!
      After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!


      • #4
        Judith, thank you for sharing this with us. I don't know how I would feel afterwards, I guess maybe that is why it seems so scary. But thank you for letting us know that these feelings are normal after surgery, and most of the time these feelings will pass.

        Even though I have not had the surgery but a possibility, panic is there even thinking about surgery. I feel like I can breathe alittle now. Thank you.

        Hugs, Trishann


        • #5
          Aww, thanks Lori and Lesa!
          Trishann, I got goosebumps when I read your response. Glad I could be of help in some small way. Your explaination is the reason I wrote this up. Thank you. Judith


          • #6
            Any huge surgery would be scary, but to me it was so worth it!! I would do it again in a second! I am VERY HAPPY with my outcome...oh yes!
            After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!


            • #7
              You are a inspiration to me, I am two weeks away from having my bladder removed and I hope like you, I feel that is was all worth it.
              How are you now it's all over and do you have a neobladder?
              What does' it feel like?
              I will be having a neo-bladder with Mitrofanoff.
              Can you live a normal life now?
              Questions!! Questions!! I know! I ask alot don't I? but I learn to cope with the idea of such major surgery and it helps me to come to terms with it all.
              I am nervous, who wouldn't be, having a huge op like this.
              Asking questions like this helps, I hope you don't mind.

              take care mum43
              I have had IC and PBS for 20+ years.
              Tried every medication I can think off.
              Had a Clam Cystoplasty with Mitrofanoff in November 2006.
              Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
              4th october 2007.

              Check out my profile on
              if you want to know more about me.


              • #8
                Hi Mum! I have an internal pouch which is made from my transverse colon. It is going on 15 years. My stoma is very tiny and located on my lower right hand side. I am assuming yours will be in the bellybutton. I live a normal life, I work, garden, hike, etc. I do things I never could do when I had my bladder. I am not aware of it unless it gets very full and then the sensation is one of pressure. I am going to PM you Judith


                • #9
                  Way to go Judith.:woohoo: We are running about the Same Race. You are the Grearest. Keep up the Good Work.



                  • #10
                    I experience severe pain 50% of the time 30% pain and when I am in pain I could cut the thing out myself but then the 20% of the time when I'm not in pain I think no it's ok and get scarred about the whole thing. I am just begining to talk to my doc about having mine out I'm scared the pain will still be there and I will have to cope with a whole new type of pain etc.. does anyone else think like me?


                    • #11
                      Hanneke, I do think like you. There are so many questions that runs through my mind and wonder if the out come will be better then what I am going through now.

                      Will I still have pain?
                      Will I be able to get proper help afterwards or get the run around?
                      Will I be able to get the stuff I need after the surgery?
                      I can go on and on and on.

                      I know these are the kind of questions to ask the doctors but things can go wrong but again things can go right. I think as an individual we have to make up our own mind about it. I think we have to know that we can't take it no more and it is time without a doubt. Then we will not doubt we did the wrong thing if things don't go completely right.

                      Hanneke I really think it is normal to feel this way because this is a major surgery and will affect your life completely but again the IC is already affect our lives.

                      Hope you can find peace in your decision and whatever you decide to do, I hope you can cope with it. I wish there was a simple answer to give you but all I can do is to hope the best for you. Yet I know this is not easy at all and I wish we did not have to make a decision. You definitely are not alone with feeling worry.

                      Sending hugs, Trishann


                      • #12
                        Thank you for letting me know that you think the same. I'm not too bad today I'm out of bed and even took the kids to the park for morning tea.


                        • #13
                          Hanneke I am happy that you had a good day today, doesn't it feel so good to have those days.

                          I know even though we still have our struggles on those days but it is just nice to be able to enjoy it alittle more. I know we don't have those days alot of times but we do get them. I guess that is why I hold on to this damage bladder, because of the good days.

                          I think when I don't have those days no more I will probably will have my bladder taken out. Or if my bladder won't hold urine any longer which I know it is a very small amount right now. I won't have no doubt about it then.

                          Yes I still wonder if I am making a mistake for not doing it now and be able to enjoy life more but again that is not a guantee. There are people though that is really doing good with it, but I still wonder how the outcome will be for me. Again I will have to have that peace knowing without a shadow of a doubt that this is for me.

                          I hope you have many more good days.

                          Sending hugs, Trishann


                          • #14
                            Bladder Removal

                            My removal was NOT a success and I have symptoms much worse than ever before. My surgery has healed and many urologists did tell me this would NOT work but this was my last resort and did not work. Have we given up? Absolutely not, but nor does it always work either.

                            My urine smellls very bad but never had I had a kidney infection, so that isn't always the case. I do not force myself to do things and the showers just wipe me out so I have home health care as well as home physical therapy and rarely do I leave the home.

                            Many times I have seen women post that if they are going to be disabled that they will wear make up and look pretty. I have to wonder sometimes. Some of us can't even do that much.

                            My stoma bleeds and there is no explanation for that either. Unless I've had bladder cancer my surgeon who is the very best says it is ok. although not good, not a bad either, just no explanation. My kidneys hurt and just to get a CAT scan causes me to have to cry and take vicodin.

                            This doesn't always work and although you do heal and move forward, one muct be prepared. I never had vaganal pain before, and phantom symptoms of having the urge to urinate drive me completely nuts. I'm accustomed to the bladder and back pain not that I'll ever like it but I have pain meds for that, but the urge to urinate when I stand does make me crazy and there have been times I actually have say there waiting just for that one drop even though I have no urethra.

                            If your surgery was not what you had hoped, sometimes it wont work. It doesn't always work, but never ever give up either. We just have to readjust our lives. I immobile for the most part and scared of leaving home. I go no where once I take any meds and visibly my husband is my only constant. Now I have people coming into my home to help me and not sure how I feel about that as I get a phone call I'm on my way and I feel a sense of lack of privacy but yet I have to do what I have to do. I may never work again and yet just to get to function in the home point is a start for me.

                            It may work, and if it does I'm very happy for you and if it doesn't I'm in the same boat. I'm totally recovered from surgery. Just not recovered from IC and I'm ok w/ that too! It's how we accept things that will make life better or worse for us. I can no longer even attempt to even have a good day good enough to clean my home or even entertain. We just bought our dream home and I look at my pool and and look at my artwork and think if I'm going to be stuck in a home this is the place to be sick. It's all in how we put things in perspective.

                            Be realistic, but never give up either! PEACE and God Bless you!
                            "I know what I got" For Mike


                            • #15
                              Prinny Joy!

                              I am so sorry you are having Problems still. I still have alot of Problems But I kinda Deal with them the Best I Can. Stomas do Bleed Very Easy. If just holding a 4x4 on it. If I rub againest something it will. 80% of Ostomy Patients keep some type of an Inefection. We have that Mucus all the time. I have had 18 surgeries for IC. Just can not Get rid of it. But I refuse to Loose. Somethimes it does get the Best of me.

                              Keep up chin up and remember to Live each day to the Fulliest cause you Never Know what is around the corner.

                              Bless you